Blood Cancer United's New REALworld Initiative Aims to Transform AML Treatments for Children
In a groundbreaking move, Blood Cancer United has unveiled the Dare to Dream REALworld: AML initiative, which is set to reshape the landscape of treatment for pediatric acute myeloid leukemia (AML). Co-founded alongside the Rally Foundation for Childhood Cancer Research, this patient-centered initiative focuses on engaging families affected by AML to construct a valuable real-world evidence database. This data aims to streamline research parameters, thus accelerating the development of effective treatments tailored specifically for children.
A personal touch underscores this initiative, as exemplified by the Breyfogle family. Twins Kenedi and Kendal both faced a harrowing battle with AML shortly after birth. While Kenedi has been fortunate enough to remain in remission after extensive chemotherapy, Kendal tragically succumbed to the disease in September 2017. Their poignant journey shines a light on the urgency this initiative embodies.
Gwen Nichols, M.D., chief medical officer at Blood Cancer United, emphasizes the critical nature of timely intervention. Given the already small patient populations in this rare childhood cancer, conventional clinical trials often struggle to provide timely outcomes. "REALworld AML provides a platform for families to contribute to vital research while simultaneously gathering evidence to enhance future studies and treatment options that children so desperately need," she notes.
The acronym REAL signifies Real-world Evidence Accelerating New Treatments, and the initiative is notable for its collaboration with Tempus (NASDAQ: TEM), which will utilize innovative technology through its personal health concierge app, Olivia. This app aids families by consolidating health information and facilitating access to educational resources tailored to their child’s specific situation.
Rally Foundation's CEO, Dean Crowe, articulates the importance of having research processes that align with the real-life challenges families endure when tackling pediatric AML. He expresses pride in collaborating on the REALworld initiative, underscoring the opportunity to glean crucial evidence directly from patient experiences. This collaborative approach not only enriches the research but also positions families as active participants in advancing treatment options.
Participating families will benefit significantly from Olivia, as it centralizes their child's health data and offers relevant educational insights. Chris Scotto DiVetta, Senior Vice President of Olivia at Tempus, shares the vision of using this platform to empower families while fostering advancements in pediatric AML research. Through this village approach, the hope is to redefine the paradigm by which treatment options for children are developed.
REALworld AML aims to create a rigorous database that will serve countless researchers in comprehending pediatric AML better and shaping future clinical trials. This initiative is particularly important in light of ongoing FDA efforts to define how real-world data can influence regulatory decisions. For this specific category of rare cancers with limited patient numbers, adopting innovative research methodologies offers a practical pathway to solutions.
Families eager to participate can contribute key insights through electronic health records of children currently battling or in remission from pediatric AML. The initiative also seeks to honor the memories of those who have lost their fight, allowing for their health records to contribute to this vital research in the near future.
Abby Breyfogle, mother of Kenedi and Kendal, found renewed purpose in her family's journey by contributing valuable health records to help inform future AML research. She believes, "When you’ve experienced pediatric AML, you're acutely aware of the urgent need for enhanced treatment options. Our daughters' experiences can pave the way for more effective solutions for families who are given the devastating news, 'your child has cancer.'"
REALworld AML is an essential component of the broader Dare to Dream initiative by Blood Cancer United, aimed at transforming pediatric blood cancer treatment through innovative research, patient advocacy, and support services. Central to this initiative is the PedAL, the first Master Clinical Trial focused on pediatric acute leukemia, screening and categorizing children based on their unique cancer biology.
In conclusion, Blood Cancer United continues to showcase how passion and partnership can rapidly enhance options for children grappling with blood cancer. The Dare to Dream initiative and REALworld AML symbolize hope and progress, garnering the collaborative strength of families, medical professionals, and research organizations toward one common goal: to ensure that children with blood cancer not only survive but flourish. For additional information on the initiative and ways to get involved, please visit Blood Cancer United.
A personal touch underscores this initiative, as exemplified by the Breyfogle family. Twins Kenedi and Kendal both faced a harrowing battle with AML shortly after birth. While Kenedi has been fortunate enough to remain in remission after extensive chemotherapy, Kendal tragically succumbed to the disease in September 2017. Their poignant journey shines a light on the urgency this initiative embodies.
Gwen Nichols, M.D., chief medical officer at Blood Cancer United, emphasizes the critical nature of timely intervention. Given the already small patient populations in this rare childhood cancer, conventional clinical trials often struggle to provide timely outcomes. "REALworld AML provides a platform for families to contribute to vital research while simultaneously gathering evidence to enhance future studies and treatment options that children so desperately need," she notes.
The acronym REAL signifies Real-world Evidence Accelerating New Treatments, and the initiative is notable for its collaboration with Tempus (NASDAQ: TEM), which will utilize innovative technology through its personal health concierge app, Olivia. This app aids families by consolidating health information and facilitating access to educational resources tailored to their child’s specific situation.
Rally Foundation's CEO, Dean Crowe, articulates the importance of having research processes that align with the real-life challenges families endure when tackling pediatric AML. He expresses pride in collaborating on the REALworld initiative, underscoring the opportunity to glean crucial evidence directly from patient experiences. This collaborative approach not only enriches the research but also positions families as active participants in advancing treatment options.
Participating families will benefit significantly from Olivia, as it centralizes their child's health data and offers relevant educational insights. Chris Scotto DiVetta, Senior Vice President of Olivia at Tempus, shares the vision of using this platform to empower families while fostering advancements in pediatric AML research. Through this village approach, the hope is to redefine the paradigm by which treatment options for children are developed.
REALworld AML aims to create a rigorous database that will serve countless researchers in comprehending pediatric AML better and shaping future clinical trials. This initiative is particularly important in light of ongoing FDA efforts to define how real-world data can influence regulatory decisions. For this specific category of rare cancers with limited patient numbers, adopting innovative research methodologies offers a practical pathway to solutions.
Families eager to participate can contribute key insights through electronic health records of children currently battling or in remission from pediatric AML. The initiative also seeks to honor the memories of those who have lost their fight, allowing for their health records to contribute to this vital research in the near future.
Abby Breyfogle, mother of Kenedi and Kendal, found renewed purpose in her family's journey by contributing valuable health records to help inform future AML research. She believes, "When you’ve experienced pediatric AML, you're acutely aware of the urgent need for enhanced treatment options. Our daughters' experiences can pave the way for more effective solutions for families who are given the devastating news, 'your child has cancer.'"
REALworld AML is an essential component of the broader Dare to Dream initiative by Blood Cancer United, aimed at transforming pediatric blood cancer treatment through innovative research, patient advocacy, and support services. Central to this initiative is the PedAL, the first Master Clinical Trial focused on pediatric acute leukemia, screening and categorizing children based on their unique cancer biology.
In conclusion, Blood Cancer United continues to showcase how passion and partnership can rapidly enhance options for children grappling with blood cancer. The Dare to Dream initiative and REALworld AML symbolize hope and progress, garnering the collaborative strength of families, medical professionals, and research organizations toward one common goal: to ensure that children with blood cancer not only survive but flourish. For additional information on the initiative and ways to get involved, please visit Blood Cancer United.
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